Tuesday 3/26/19

Thank you isn’t enough for all your thoughts and prayers for our family during this extremely difficult time. Please keep sharing your wonderful stories and memories of Meghan so she lives on through all of us. 

We love you Meghan ❤️

Thursday 3/21/19

Memorial service information for Meghan,
Viewing will be at Evans Funeral Chapel, 16924 York Rd Monkton, MD 21111 Friday 7-9PM Saturday 10-12 Noon. Service will be at St. James Episcopal Church 31 Monkton Rd Monkton, MD 21111 at 1pm.

There will be a reception after the funeral on the church site everyone is invited to.

There will be a memorial service on Tuesday 3/26 at William Clark Funeral Home, 1003 Main St Stroudsburg, PA 18360 from 6pm - 8pm.

In Lieu of flowers we ask for donations to St. Jude Research Children’s Hospital.

Wednesday 3/20/19

There are no words for today. Meghan passed away this afternoon with all of us right by her side. She fought every single day and never gave up. We appreciate all of your thoughts and prayers. In this very difficult time we are finding some peace in knowing she is no longer in pain. We love you Meghan! 

Tuesday 3/19/19

Meghan has been resting all day. Labs have stopped. They have stopped all medication, she is not on any antibiotics or anti fungal anymore. Meghan has been put on a morphine drip to keep her comfortable. This is not ending the way we have all hoped for, our hearts are breaking. The doctors are telling us it may only be a few days until Meghan passes 😢 Thank you so much for all thoughts and prayers during this very difficult time, there are just no words💔.

Monday 3/18/19

Meghan got some rest last night, she was only up once. Her hemo is at 6.5 and white count is 23.8. They are holding off on giving her blood because her heart rate is ok. Meghan was very unresponsive this morning and not following simple commands. Neuro used the rubber mallet on her legs today to test reflexes and she did not show any reaction. Doctors stopped her antibiotics but they will not stop the anti fungal. They believe if they stop the anti-fungal medication her infections will go to her blood, causing more issues. Her doctors had a meeting with Rob today. Meghan is very sick and they have done everything they can but Meghan’s body isn’t responding. She is still bleeding and they can’t get it to stop. The MRI results are inconclusive right now, they know she hasn’t had a stroke but there are changes in her brain. As of today they decided to put Meghan on comfort care, which is basically hospice care in the hospital. They will start her on a morphine drip and make sure she is comfortable. Please pray Meghan isn’t in pain. This is all very hard for us to wrap our heads around and still can’t believe this is all happening. 

Sunday 3/17/19

Meghan had an okay night. Hemo is 7.8, white count is at 24 and platelets are at 37. Rob is waiting to hear from the NP if the results in from the MRI yesterday. Meghan was bleeding a little again from her abdomen. ACES came and repacked her and added floseal to help her clot. Vitals are stable. Neuro doctor came in and explained to Rob that the MRI had a change in her white matter. He is going to have his team look over it as well so we will get more info on that tomorrow. Meghan is resting and hopefully she can for the night. 

Saturday 3/16/19

Meghan had an ok night and got some sleep. She did have a psychological exam and they think she is suffering from delirium. They suggested to do an MRI of her brain to make sure they aren’t missing anything. They are going to start her on a medication for that called Halodol. Doctors are trying to ween Meghan off of some medication to help try and clean her blood and system a little so it can hopefully revive itself. She went back off the ventilator late morning and doing ok with that. They stopped all antibiotics and she is only on the anti-fungal medication for now. Meghan still has that ooze bleed from her abdomen and they repacked it this morning. Meghan went for the MRI at 4pm for her brain. They said they will not have the results until tomorrow. Meghan was sleeping on and off for most of the day and not too responsive. 

Friday 3/15/19

Overnight Meghan had some breathing issues again and she is back on the ventilator. Hemo is 7.1, white is 25.8 and platelets are at 34. They gave her plasma & platelets. Meghan is very tired and somewhat spaced out lately. Doctors switched out Meghan’s trach to a Shiley one. They said this one has a balloon on the end that gets inflated. This will help with secretions. Meghan in the afternoon got a little flush so they gave her Benadryl, they think it was a reaction from the blood products. Hoping Meghan gets some rest tonight. 

Thursday 3/14/19

Meghan isn’t sleeping well, she can’t get comfortable overnight. Meghan hasn’t had any more hallucinations since the few yesterday. Her hemo is 8.2, white count is 32.2 and platelets 59. Kidney and liver levels were all normal. The doctors will be removing the stent from Meghan’s pancreas today. She went for the procedure around 4pm. Before she signed consent for this procedure, Meghan told the doctors she doesn’t want anymore procedures. She is losing her fight. We will not give up on her and keep reminding her of what she has to live for. Please everyone say extra prayers that Meghan gains strength to fight. Procedure went well and stent was removed. Meghan did tell ACES after she will continue with treatment. This has been a long road but we need Meghan to continue pushing through! 

Wednesday 3/13/19

Meghan was up a lot last night and didn’t get much sleep. Her hemo this morning dropped to 6.5 and they are giving her a unit of blood. White count is still around 29.6 and platelets are at 74. ACES is going to change her wound vac and place new packing to help with this slow bleed. Doctors are going to run a TEG test. This test is to see how her blood is clotting. Vitals are good and she still is doing ok off the ventilator. The TEG test came back 100% normal. Around 7pm ACES was running a few test because Meghan started to hallucinate a little bit. They are testing her blood to see if she is retaining CO2. Doctors don’t think it is the Ritalin because it was only just started yesterday but aren’t 100% sure what is causing it. Test for the CO2 came back ok, so for now she will stay off the ventilator. Nurse checked her blood sugar and that was 92. Meghan is resting now. In the morning when they do labs they are going to check kidney and liver levels too. Ritalin has been stopped. Meghan is asleep now, hopefully she gets a good nights rest.

Tuesday 3/12/19

Meghan couldn’t get comfortable last night so she didn’t get much sleep. Hemo is at 7.3, white count is at 29.4. Meghan’s platelets have been trending down as well they are at 95 today. They gave her some fluids last night to help with her blood pressure. Meghan was in her chair for a little bit and PT worked with her. She is tired but doing better with her breathing. During PT she was extremely tired and wasn’t participating a lot. Doctors want to lower her fentanyl patch and give her something else to stimulate her. They are going to give her Ritalin. They started the Ritalin today and said it may take a few days to kick in but hopeful it will help. Hopefully Meghan can get some rest tonight. 

Monday 3/11/19

Meghan had an okay night. Hemo is at 8.1 and white count is still at 31. The pigtail drained  about 1,050CCs so far from the area around her left lung. Meghan has gone off the ventilator and doing ok as of now. She is having the procedure today for the right side by her lung. They removed just under 400CCs from the area around her right lung. Doctors said they will do cultures on the fluid. Meghan’s blood pressure was dropping a little this afternoon but doctors are monitoring her. Doctors think its from all the change in removing all of the fluid. 

Sunday 3/10/19

Meghan slept on and off last night and this morning labs aren’t great. Hemo dropped to 6.6 and her white count went up to 31.6. Meghan was bleeding in the same area she has been and they gave her a unit of blood. Pigtail drain on her left side by the area of her lungs was placed around 4pm. Once it was placed it had drained just under 400CCs of fluid in 4 hours. Meghan told Rob she can already feel a difference in her chest. 

Saturday 3/9/19

Meghan was off the vent for a little last night but was having issues and going back it this morning. IR will do her procedure but the nurse told mom and dad, probably not today. Meghan is having difficulty breathing even with being on ventilator. Hopefully they can get IR to do the drain for her lungs. 

Friday 3/8/19

Meghan got some sleep last night and still on the ventilator. Hemo is 7.3 and white count is 20.6. The nurse told Rob they believe she has another bleed from the abdomen. She is going for a CT now. The CT will check the bleed and they will check her chest as well to check the pneumonia. The CT showed a large collection around Meghan’s left lung, they are going to do a pigtail drain. The official read came back and she also has a small fluid collection on the right side too so they will do some kind of drain for that. When they got the report back about her abdomen the bleeding had stopped on its own. 

Thursday 3/7/19

Meghan slept on and off last night. Doctors did a chest x-ray this morning to check on the pneumonia. Hemo this morning was at 7.6 and white count is 19.6. PT worked with her today and she stood for 30 seconds on the floor 3 times with assistance from her nurses. Doctors talked with Rob today and gave some information about what is currently going on. Meghan’s uterus doesn’t look normal but they also said it isn’t seriously infected either. The stent she has in her pancreas will be removed soon. They are not going to replace it for now because it isn’t able to do what they wanted it to do anyways. They think the underlying issue is severe necrotizing pancreatitis. Meghan’s doctors believe that a lot of her healing process begins with PT and OT. Once she gets stronger her body will start to heal. Please send positive prayers that Meghan gains strength and fights to get herself better. Tonight Meghan went back on the ventilator. She was having some breathing trouble again. Her chest x-ray from this morning showed that nothing has changed, her pneumonia hasn’t got worse or better. 

Wednesday 3/6/19

Meghan’s temperature went down last night to 98.2. Meghan had an ok night but started to have some breathing issues again. She is back on the ventilator. Hemo today is 8.3 and she hasn’t received blood so that’s good. Her white blood cell count went up to 22. Doctors believe the small ooze bleed is from a clot that has been in her abdomen. They removed the clot bedside and watched her very closely for 30 mins after and no signs of bleeding. They took the wound vac off today and redid her dressing and said the skin graft is still looking really good. Meghan is getting a breathing treatment now and hopefully she’ll get some sleep tonight. 

Tuesday 3/5/19

Today Teagan is 6 months old and sweet as can be. Meghan had an okay night and only woke up 2 times. On the CT Meghan’s uterus looked enlarged but during the procedure yesterday it didn’t seem that way. Doctors and OB team are trying to see what else could be going on. Hemo today was 8.2, white was 20, and temperature was 100.6. Meghan’s nurse did some light stretches today with her. She still has a slight ooze bleed but doctors are not worried about that right now. Meghan got off the ventilator today and has been doing well. Also she has spent a few hours in her chair. 

Monday 3/4/19

Meghan had an okay night and got some rest. Doctors are going to do another procedure to check her uterus. They will remove any fluid if necessary. Meghan did have a fever this morning of 101.1. Today her hemo was at 7 and white count is down to 20.6. She will receive a unit of blood and plasma before the procedure to help with any bleeding. Meghan went for the procedure around 3:15pm. Procedure went as planned and no fluid needed to be removed. For her pneumonia they will continue her antibiotics. No plan for any x-rays or chest CT unless something worsen. Meghan’s most recent ct showed her fistulas (holes) in her intestines are still there. They aren’t better but haven’t gotten worse either. Hoping Meghan gets some rest tonight. 

Subday 3/3/19

Meghan had a decent night and got some sleep. Meghan was asking to see Hunter and all of her doctors cleared it! So Hunter got to visit today for a little bit this afternoon. Meghan’s hemo is at 7.1 and white went down to 23.8. She did a little PT today for her chest to help her lungs. She stood for 10 minutes at 44 degrees. Meghan is just resting for the rest of the night and vitals are stable. 

Saturday 3/2/19

Meghan couldn’t get comfortable last night and did not get a lot of sleep. She had a fever early this morning of 102. Hemo is at 7.8 and white went up to 32.1. They gave her Tylenol for the fever. They did a chest x-ray and she potentially has pneumonia. They are doing a CT on her chest and abdomen. This scan will confirm if it is pneumonia and check for new fluid in her abdomen. So Meghan now has pneumonia. She has fluid in her right lung in the middle and lower lobes. She will be staying on the ventilator to help her lungs work out the fluid. Meghan is doing ok and told the nurse she wasn’t in pain. Vitals are stable. 

Friday 3/1/19

Meghan had a little bit of breathing issues over night so she was put back on the ventilator. They believe it is from the anesthesia from yesterday’s procedure. Meghan’s hemo is at 8 and white count jumped to 31. All of the cultures are negative as of now. They took a new culture from her secretions by her trach as well. Doctors did try and take Meghan off the ventilator in the afternoon but she was still have some issues, so she will stay on the ventilator for now. They are going to do the ultrasound of her whole abdomen today too. Also this afternoon Meg had a fever again of 100.2. Nurse gave her some Tylenol and later in the day it was down to 97.9 but that’s with the medication. Meghan stayed in her bed today but did wear her boots on and off. 

Thursday 2/28/19

Meghan had a decent night. She was going to be the first case today for the procedure to remove the fluid from her uterus but an emergency came in before her. OB took her down for the procedure around 2pm. Procedure went well. They removed 20ml of fluid from the uterus. They will do cultures with the fluid to see if there are any infections. During the procedure Meghan received 4 units of plasma. Doctors told Rob they did this as precaution from the procedure. 

Wednesday 2/27/19

Meghan had a good night and got some rest. Labs were stable this morning. PT and OT worked with her today. She stood on the floor with support from her nurses and that made Meghan smile. She spent some time in her chair today too. Vitals are stable and again hoping Meghan gets sleep tonight. 

Tuesday 2/26/19

Meghan started to bleed again last night around 10pm. ACES was paged to her room and was checking her out. This bleed was from a blood clot becoming loose from a previous bleed. Doctors removed it and changed out her wound vac. Meghan’s skin graft looks ok and the bleeding has stopped. They redid labs and her hemo was at 7.3. This mornings lab came back and her hemo did drop to 6.9. Doctors gave her a unit of blood. OB will be doing the procedure to remove the fluid from her uterus on Thursday. She has been wearing her boots today on and off for 2 hours at a time and they had her standing in the bed for 20 mins at 40 degrees. Hopefully tonight is a calm restful night. 

Monday 2/25/19

Meghan couldn’t get comfortable last night, so she didn’t get much sleep. The drains that are by the fistulas (holes) in her intestines are putting out a lot of fluid. Hemo is at 7 and white is at 18. The nurse told Rob that she does look a little pale right now but vitals are stable. We are hoping to hear from IR with a plan for all the fluid. So IR, ACES, gastro and OB all met today. Meghan’s most recent CT was showing fluid in her uterus. The doctors think this could be part of the rise in the white count too. This week OB will go into the uterus and remove the fluid. They will not be removing the whole uterus at this time. Her doctors do not want to cause the possibility of making anything worse. We are hoping Meghan gets some much needed rest tonight. 

Sunday 2/24/19

Meghan got some rest last night and hasn’t asked for pain medication today. Meghan has spent over 6 hours in her chair today and with boots on and off every hour. She told the nurses she is tired and hopefully she will get some rest tonight. 

Saturday 2/23/19

Meghan didn’t sleep well last night. Mom and Dad went down to visit with Meghan today. They took her late this morning for a CT to check all of her drains. Nurse Practitioner told Mom and Dad that she looked at the CT herself and the pancreas is definitely still leaking fluid. She is going to get IR (interventional radiology) to see Meghan hopefully on Monday. She wants to see if they can do another drain to get that fluid out of Meghan’s abdomen. Hemo was at 7 today but heart rate was ok, so they are not giving her blood right now. Meghan is wearing boots on and off to help with foot drop. They have created a schedule for her one hour on one hour off. 

Friday 2/22/19

Meghan slept almost the whole night. Hemo is at 7.4, white is at 16.6 and platelets are 249. Around noon Meghan had another fever of 100.5 and ACES are with her now. She is currently bleeding from somewhere in her abdomen again. The nurse told Rob it isn’t a bad bleed but visible and in her drains. So ACES called Rob and yesterday they put something on her abdomen to suction out any extra fluids. The suction caused the bleed to start, they turned it off and now it is set just for gravity to drain the fluid. Meghan is now doing ok and getting her TPN overnight. Last temperature they took was 98.2. 

Thursday 2/21/19

Meghan got some rest last night. The skin graft is looking good. Meghan’s heart rate was a little elevated this morning but back to normal. Vitals are all looking stable. They tried to put meds through her J tube this morning and it was blocked. They will be doing a test to see what is going on with that. While ACES was with her today they do believe the pancreas is still leaking fluid. Late morning Meghan had a temperature so they will be doing labs again to check everything. So ACES had decided to change her J Tube to a red rubber drain. They want to get GI doctors involved again to see how they can maybe help all this pancreatic fluid. The doctors did drain some more fluid today from a small hole in her abdomen. They do not want any of that fluid to destroy any of her skin graft. Meghan went for the procedure to get her drain changed and everything went well. Hopefully this helps and we can continue to move forward. For now she will be staying at the hospital. 

Wednesday 2/20/19

Meghan didn’t sleep well last night. This morning she had a small bleed under her wound vac on her abdomen. They could stitched it up and it stopped. Not much else going for Meghan today. Hoping she will get some rest tonight. 

Tuesday 2/19/19

Meghan got some decent sleep last night. ACES had cleared her to go back to Midtown and they are just waiting for a bed to be open. Meghan still didn’t ask for pain meds today. Nicole got to show her some pictures and videos of Teagan. She was using her speaking valve for a little bit. The doctor came by to fix her stitches by her J tube (that is the tube putting dextrose in her intestines). All of her vitals right now are good and hoping for a restful night. 

Monday 2/18/19

In the morning we got to see Teagan too. Meghan’s AST has gone down to 63 and ALT to 76. Her bilirubin was at 3, all heading in the right direction. Today was the first day in a very long time that Meghan didn’t ask for pain meds. She has spent most of her day in her chair too. 

Sunday 2/17/19

We all got to see Hunter in the morning before going to visit Meghan. All the kids aren’t allowed at the hospital right now because of flu season. Meghan was in her chair for most of the day. She was getting upset, she thought she was in the hospital for a year. We all reassured her it has felt like forever but it’s only 5 months. She seemed a little better after talking with everyone. Hoping she stays positive and starts to heal.

Saturday 2/16/19

Labs are looking a little better but still high. Mom, Dad, me, Jimmy and Nicole all went down today to visit. Meghan was happy to see everyone. Her nurse was trying to tell her to just keep up what she is doing and PT is really on her. She was sleeping on and off for most of the day. She can use her speaking valve but it is uncomfortable for her. All of Meghan’s vitals were good all day. 

Friday 2/15/19

Overnight Meghan got sick 3 times in 2 hours. They will be transferring her back to the hospital. Her vitals are stable and they have started her on antibiotics in case this is a new infection. She got a unit of blood before her drain procedure. The nurse told Rob she looks a little jaundice. Her AST and ALT are double/triple the normal count. Those labs deal with liver enzymes. Meghan’s bilirubin is at 3.7. Prayers please for a calm night 🙏🏼

Thursday 2/14/19

Meghan still has a fever. Speech did come to see Meghan today and worked with the speaking valve for about 30 mins. OT had her brushing her own teeth and had her coloring a little bit. PT was focusing on her legs today. The CT came back and her gallbladder is definitely inflamed and she has more fluid in that area. Meghan’s doctors want to place a larger drain in that area. They are going to transfer her back to the hospital. Right now they do not have an open room for Meghan to go back to. IR can do this procedure at the rehab facility so they will wait for now and see how Meghan’s night goes. 

Wednesday 2/13/19

Meghan had a decent night and PT and OT were with her this morning. Meghan has a small fever, they are going to take her for a CT just to make sure everything is ok. Unofficial report looks like the gallbladder is inflamed and there is fluid in the pancreatic area.   

Tuesday 2/12/19

Meghan had an okay night. Labs and vitals are stable. PT and OT worked with Meghan today but she got a little nauseous so they let her rest the rest of the day. 

Monday 2/11/19

Meghan couldn’t get comfortable last night and didn’t get much sleep. Hemo count is at 8.8, white count is at 12.1 and platelets are at 217. Doctors are happy with these labs. PT came to meet Meghan today. They will be working with her 5 times a week. We aren’t sure of times or how many hours but the weekends will be her rest time. Vitals are good and day one of PT will start tomorrow. 

Sunday 2/10/19

Meghan’s hemo did jump up to 9. Yesterday they gave her a unit of blood as well as the iron. No signs of active bleeding just gave it as a  precaution. Hunter went to visit Meghan today. Hoping PT will be in to meet her so she can start her new schedule. 

Saturday 2/9/19

Meghan slept most of the night. Labs came back and hemo is at 7.1 and white count is at 10.5. The nurse explained to Rob white count will go up and down for a little because her body is trying to heal so much. They are going to give her liquid iron for 5 days to see if that helps keep her hemo levels up. Meghan met the dietitian today and no changes to the current TPN (IV nutrition) she is on. The doctors have not said anything about starting tube feeds again for now. PT does not work with the patients over the weekend to let them rest so she will meet them on Monday. 

Friday 2/8/19

Meghan had a decent night and labs are holding stable, white count is at 7.7 which is one of the lowest we have seen. Speech therapist came and worked with Meghan today. She is using the speaking valve more. The doctors will wait until they are totally in a clear for surgeries before removing her trach. Meghan had a relaxing calm day and hopefully going to get some rest. 

Thursday 2/7/19

Meghan had a decent night and got some rest. All of her vitals are stable. She was using her speaking valve again. Transfer to rehab was successful and Meghan is settled in her new room. Today they don’t have her doing to much but getting use to everything new. Labs will still be done daily and we are hopeful she will slowly start her healing process. 

Wednesday 2/6/19

Meghan didn’t sleep well and labs are stable. Meghan moving to rehab at midtown was 100% approved. Her transfer is scheduled for 10am tomorrow. Gastro doctors called Rob and the stent that was placed a while ago did not come out on its own so that needs to be changed. They did this procedure via  camera this afternoon. The doctors did not see any improvement in the pancreas so they replaced the stent. This will be replaced in 4 weeks again if needed to prevent infection. If Meghan still needs the stent at that point her team of doctors will come up with a long term plan. Later that night Meghan’s nurse told Rob that her graft is looking really good. She still has a small wound vac over it and no signs of any bleeding. 

Tuesday 2/5/19

Last night labs came back and were ok, doctors think Meghan was dehydrated. They ending up giving her some fluids. This morning Meghan was using her speaking valve a little bit and labs were all stable. ACES saw Meghan and are happy with how things are looking, the graft and drains. Later in the afternoon ACES has medically cleared Meghan to go to rehab. There are still things in the works so we don’t know exactly what day but the process has started. They are currently waiting for insurance to okay the move. She will be going to rehab at midtown. This is still affiliated with the hospital and ACES will be checking in with her. Rehab does have somewhat of an ICU if something would happen, they can stabilize her and she would go right back to the hospital. Once this happens we are all praying hard we do not go backwards. Also today Princess Teagan is 5 months old! 💗

Monday 2/4/19

Meghan had an ok night. Labs are about the same as yesterday morning. Speech therapy came to see her today. She does have a speaking valve now but it still is uncomfortable. Speech will continue to work with her. Rob just let us know her drains are putting out a little more fluid than normal and it has a tint of red, so they sent labs. Vitals are still stable. 

Sunday 2/3/19

Meghan’s labs this morning were ok. Hemo is 7.8, white count is 14.5 and platelets are at 280. They did check her skin graft and believe 80% has taken. The doctors are still not sure if she will need a second graft. Where they took her skin from on her leg is healing nicely. Unfortunately for now they stopped her tube feeds. It was backing up and coming out of her drains so the doctors knew it was leaking into her abdomen. They are going to continue with dextrose through her intestines. Dextrose is less of a chance of infection if it does end up leaking into her abdomen. Rehab is still on the radar for Meghan but it still really depends on her skin graft. She stood for 15 mins at 45 degrees today. 

Saturday 2/2/19

Meghan woke up a few times last night and it was uneventful. Meghan will get an X-ray today to check the placement of drains. Nothing is wrong they do these every so often just to check everything. Today she stood for 18 mins at 45 degrees. All of Meghan’s vitals are looking good. 

Friday 2/1/19

Meghan had a restless night again. Meghan got a new trach today. If they put their finger over a certain piece Meghan was able to say hello a few times. 😊 She will be working with PT today and had the heat lamp on her leg on and off. 

Thursday 1/31/19

Meghan didn’t get much sleep last night, just couldn’t get comfortable. Labs are all around the same and no major drops. In rounds this morning, doctors were happy with vitals, how Meghan’s leg looked, and her drain output. For now they will leave the abdomen alone until Tuesday to check it. If it looks good there could be talk of moving to rehab. That is all depending on how the skin graft looks, no decision will be made until then. Her tube feedings are still at 10ml and they evaluate that day to day. Right now, no talk of upping her feedings. Meghan’s vitals are good and she hasn’t felt nauseous all day. Hopeful for a restful night. 🙏🏼💛

Wednesday 1/30/19

Meghan had an ok night. Where they took the skin from her leg she said it was sore. Today they are going to give her 2 units of plasma. In her labs they test a ton of different things. Certain ones they are watching are factor 8 and INR which are clotting factors. They want to be proactive with the new graft. She still has no signs of active bleeding. 🙏🏼 Meghan was in her chair today for a few hours. Where the doctors took the skin off of Meghan’s leg it is leaking some fluid. Doctors said that is totally normal and they brought in a heat lamp for her leg to help keep it dry. Vitals have been stable all day. 

Tuesday 1/29/19 ... continued

Surgery went well. The new tube was placed in her stomach and skin graft was put on. Doctor said the area looked good and hopefully she won’t need another one but they will know that in 7-10 days. When she got back to the room Rob said she looked ok and is resting. Hoping she gets a good nights rest! 

Tuesday 1/29/19

Meghan’s labs again were decent this morning, her hemo is 8.5, white count is down to 12.8 and platelets are at 330. She will be going down for her surgery this afternoon. She is doing some standing again today. She did 15 minutes at 45 degrees and 15 minutes at 50 degrees. She went to surgery around 1pm. 

Monday 1/28/19

Meghan had a good nights sleep. ACES changed her wound vac this morning. Her nurse today brought in two new CDs for Meghan to listen to while doing PT and OT. She stood this morning at 46 degrees and will again this afternoon. Meghan’s vitals are looking really good. Meghan is fully aware of the surgery she has tomorrow and excited to get the tube out of her nose.

Sunday 1/27/19

Meghan slept most of the night and labs are looking decent. They are sending out a sample to the lab of Meghan’s fluid from her drain. They are checking that for tube feeding liquid and to see if it is leaking into her abdomen. So Rob was able to have a meeting with the doctors today and conferenced in Jimmy and Nicole. So information about her tube feedings. It was in the fluid, they said the fluid was backing up and not moving through Meghan’s intestines so they lowered that back to 10ml. She will have her next skin graft surgery on Tuesday. They are happy with how her abdomen looks and hopeful this one will take. Also they will be using Meghan’s own skin. Within 7-10 days they will know the status of the skin graft. They will know if it is taking and if she would need a second one or not. Right now Meghan has a tube in her nose which suctions out any fluid that gets in her stomach. During the surgery for the graft they are going to remove that tube and place a new one directly into Meghan’s stomach. This tube will still be used to suction out anything but it is just to make Meghan feel more comfortable. If things go well with the skin grafts next topic is Meghan’s trach. The doctors want to make sure she is done with surgeries before removing that. Rehab is down the road but the skin graft has to be 100% in order for her to go. Meghan stood today at 52 degrees for about 10 mins. All of her vitals are good. Meghan had a visit with Hunter today and hopefully Teagan will be down during the week. We got a lot of information today and doctors seemed very hopeful that we’re heading in a better direction. They did say she still had a very long road ahead but we are taking tiny steps forward. 

Saturday 1/26/19

Mom and Dad went to visit Meghan today. Labs are about the same from yesterday. Meghan was in her chair for about 2.5 hours today and stood in the bed for about 15 minutes. Meghan said her legs were sore and they explained that was good. It is a sore like going to the gym, it’s a sign her muscles are working. Hopefully Meghan keeps moving forward, slow and steady. 🙏🏼

Friday 1/25/19

Meghan’s labs are still just about the same, hemo is 8.6 and white count is at 24.8. All the cultures they took are still negative. Meghan stood in the bed today for 20 minutes at 45 degrees. Meghan’s tube feeding went up to 20ml. This is still a small amount but slow and steady. She stood in the bed for a second time today for 21 minutes at 51 degrees. 

Thursday 1/24/19

Meghan had a quiet night and labs are holding stable. She did some PT today for about 90 minutes. Doctors are happy with the way Meghan’s abdomen is looking. They believe the tube feedings are doing what they wanted. Vitals are strong and hoping for a restful night. 

Wednesday 1/23/19

Meghan had a good night and slept most of it. Her hemo is 8.5, white count is at 27.4 and platelets at 336. Meghan spent 2 hours in her chair today and vitals are holding steady. Not much going on for Meghan today, which we all like to hear. 

Tuesday 1/22/19

Last night was not a great night. Meghan’s heart rate went up around 3am and they took labs early and her hemo had dropped to 6.5. She received 2 units of blood and one plasma. ACES did a bedside evaluation and saw it was the same exact area bleeding. They repacked her and it has stopped. Her labs after getting the blood came back and hemo is up to 9.2. Although her white count went up to 38.8, infectious disease doctors are watching her closely and new cultures were taken. Around 10pm her vitals are back to being stable and Meghan is just exhausted. 

Monday 1/21/19

Meghan slept most of the night last night. Labs came back and hemo is at 7.7 and her white blood cell count is at 19.5. Meghan still has no signs of any active bleeding. Today they did decide she will be moving back to IMC (Intermediate Care Unit). PT and OT did some work with her today. She stood on the floor twice for about 45 seconds with assistance on both sides. Tube feed is still happening at a very small amount but she seems to be tolerating it. She was moved around 6:45pm and all settled in. Vitals are good and hopeful for an uneventful night. 

Sunday 1/20/19

Doctors said the labs are showing the vitamin K is working. Meghan got some decent sleep last night as well. There are still no signs of any active bleeding. Hunter had a good visit with Meghan today! They both enjoyed seeing each other and Hunter got to give mommy lots of kisses. Rob got to talk to one of the doctors about her future skin graft. Right now with the amount of fluid still in the abdomen the graft would not take. They said they have to wait to do the graft until the amount of fluid has decreased. They did an ultrasound yesterday to check for any clots in her legs and that came back all clear. Doctors were happy with the dextrose coming out in her colostomy bag and decided to try and start tube feeds. It is a very small amount at first and they will see how Meghan tolerates it. Hopefully these uneventful days continue. 

Saturday 1/19/19

Meghan’s hemo is holding steady around 7.3. She had another uneventful night. Doctors from ICU put in for a transfer back to the IMC (intermediate care unit) but ACES denied it for now. Vitals have been stable all day. Rob will be bringing Hunter to see Meghan tomorrow. 

Friday 1/18/19

Meghan had a decent night and ACES will be doing a dressing change today. Labs came back and hemo is at 7.3 and white count is 17.9, which is in the right direction. Meghan’s plan for the day is some PT & OT. Vitals are stable and we are all praying it stays this way. 

Thursday 1/17/19

Meghan’s hemo early this morning is 7.1 but no new bleeding that they can see. They are still giving her dextrose and will be watching her output in the colostomy bag. Meghan was in her chair for 5 hours today. No need for labs during the day, vitals were all stable. Hoping to have a restful night. 

Wednesday 1/16/19

Meghan had a decent night. ACES explained to Rob that she still does have fistulas but they aren’t super worried about them right now. They will not go in surgically, that would cause more harm. Her hemo this morning is at 7.6 and white count at 17. The spray foam she has as packing will dissolve over time and it has clotting factors in it. All cultures are still negative and not showing anything new. Meghan is having a pretty relaxing day. Around 6pm they were checking her abdomen and saw some blood. They are going to do labs and watch it closely. Hemo only dropped to 7.4 so not alarming but the white count jumped to 24. Vitals are all stable. The doctors are thinking the jump in white is her body trying to heal. 

Tuesday 1/15/19

Meghan got a good nights sleep last night. The dextrose they are doing will be going on slowly for a few days to see how she tolerates it. We all wish we could give her some Olive Garden or a Coke and we bet that would wake her intestines right up. Next labs, hemo is about the same & white count is slowly going up. White count is at 19.5. IR (Interventional Radiology) was checking her drains today too for correct placement. ACES did her dressing change and put the wound vac back on. There are no signs of active bleeding. Also they changed her packing to a spray foam to keep pressure on the area. Meghan did some PT & OT today as well. She has been off the vent for a little bit and no issues so far. Labs are back down to once a day. 

Monday 1/14/19

Meghan’s had an uneventful night. Her labs this morning were, hemo 7.4 & white blood cell count is at 16. Blood pressure is holding stable and with no medication. All the cultures they have taken are still negative so no changes with medications for any infections. They are going to try putting dextrose through her intestines and try to get them to wake up. Hopefully if this works, Meghan would be able to get tube feeds and get the better nutrition she needs. 

Sunday 1/13/19

Doctors gave her blood after last nights labs. This morning her hemo was at 8.3. ACES was in to check her abdomen and do a packing & dressing change. Currently she has no active bleeds so hopefully this continues. Labs again were taken and hemo is down to 7.6. Rob got to talk to the doctors and they do not believe she is actively bleeding. They are thinking because of her current blood infection and all the fluid they are giving her it is affecting her hemoglobin. She had another echocardiogram this morning and the number from that test has improved to 55% so that went in a better direction. Around 4:30pm doctors came in and are happy with how things look. They stopped the blood pressure medication for now and she has been around 110/61. They would like to get her off the vent tomorrow. Next labs came back and hemo is 7, white count is 15.8 and platelets at 175. Meghan asked the nurse to stretch out her legs and do some PT exercises. Last labs for today her hemo went up 7.3, fingers crossed we stay in this direction! 🙏🏼

Saturday 1/12/19

Morning labs weren’t great, her hemo is 7.8, white count 13 and her blood pressure is still low at 91/53. Little later in the morning her blood pressure was 88/51 and they have her on Tranexamic Acid to help her blood clot. While ACES was checking on Meghan and doing rounds they had a conversation with Rob. Surgically, all efforts have been exhausted. Meghan’s pancreatic area has been operated on so much and all her veins & arteries have been blocked off. Doctors are saying they can’t do anything more surgically to Meghan without causing more harm. So moving forward all they can do is pack the area. If the bleeding doesn’t stop from packing, there may be a very difficult conversation none of us want to have. 😢 Meghan is on stronger pain medication and is in and out of sleeping. Currently her packing is not soaked in blood so that is good so they can’t say for sure if she is currently bleeding. Doctors just did a dressing change and skin graft that she has is still fully in tact. They are doing a chest X-ray to check for fluid and any new infections. She also will get another echocardiogram done tomorrow morning. Around 5:45pm labs came back and hemo is at 7.5 and white count is at 15.6. Her blood sugar dropped way low to 36 too. They gave her some dextrose to help. Her blood pressure keeps dropping and going back up so they keep upping and lowering her medication. They are giving her some fluid to help maintain her blood pressure. Next labs came back and hemo is 6.7. Meghan has received almost 3 liters of fluid in the past 24 hours so they think that is just diluting her blood. 

Friday 1/11/19

Meghan had a decent night and labs are all holding stable. She stood today for 20 mins at 60 degrees and had an ice pop while standing. Labs will only be once a day, they want to take the least amount of blood possible. The uterus situation with the blood has been put on hold, her white count is normal so they don’t think that is an issue. Around 630pm doctors called Rob and Meghan’s body was not responding to the vitamin K anymore so they were going to try it again. With PT she stood 3 times today. Bad news there were some clots coming out of her one drain. They are doing labs now and a CT. Vitals are stable right now. They decided while taking her to CT they will be taking her back to ICU. They believe she is bleeding, her heart rate is 140 and MAPS at 60. Rob called me on his way to the hospital and her hemo came back at 10. Which doesn’t make sense, on the CT they saw an active bleed in the area of the pancreas. They took out a huge clot the size of a placenta. Doctors are with her and looking at things bedside in her room in ICU and Meghan is under anesthesia. It was a venous bleed in the pancreatic area. The doctors have packed it with biodegradable gauze and combat gauze. She got one unit of blood. They will redo labs around 1230-130am. Meghan’s heart rate is still high at 140 and MAPS 63. They have blood on stand by if needed and still on medication for her blood pressure. Since they have never seen anything like this, the doctors have no case studies even close to what Meghan has been going through. Right now, the doctors do not have a long term plan. They will act as soon as anything happens. They ending up doing labs around 10:30pm. Meghan’s hemo is at 9.5, white count is 6.5 and platelets at 223.

Thursday 1/10/19

Hemo dropped last night to 6.7 and they are giving her two units of blood. Blood work showed the vitamin k did help a little bit. Also with her ooze bleeding she needs better nutrition for that to stop. The TPN is giving her what she needs but it isn’t the best. Once she heals and gets better nutrition the ooze will stop. Doctors are telling Rob to hold on to the small victories, doing good with PT and out of ICU. The skin graft she has looks healthy. Hemo around 5:30pm is 9.5, white count is 4.4 and platelets are 258. She had a decent day with PT and vitals look good - heart rate is 120 and MAPS 93. 

Wednesday 1/9/19

Midnight labs came back and hemo was 7.3, so they are holding off on blood for now. Plan for today - OB will be getting back involved. The most recent CT showed blood in the uterus. This has been there but doctors did not relay that information to Rob. They are now bringing it up because it may be the cause of the new infection. Dr. Diaz wants to also do a fistula gram to see if & how fluid is moving in her abdomen. They are going to watch the drains very closely for any issues with the output. Labs at 4am hemo stayed the same so that was good. The OB evaluation will be pushed to tomorrow. Doctors want hematologists to get back involved to retest her blood. Hematologists will be dissecting her blood and looking at clotting issues/bleeding issues. The blood in the uterus may not be the issue but they are looking into all options. PT worked with her today for about 45 minutes. The one drain on her left side (JP drain) is not draining anything. Abdominal drain is doing about 50CCs every 4 hours. Labs will be redone at 4pm. She stood again at 50 degrees for 20 minutes. This was the first time her knees did not buckle. They also approved her to have a little orange sherbet today too. Hematologists finally decided after looking at everything to give her vitamin K. They will watch her labs to see if this makes a difference. OB will do a consult still just not sure when. Meghan’s hemo is currently at 7.1. 

Tueaday 1/8/19

Meghan had an ok night. Hemoglobin dropped to 7.7 but doctors are ok with that as long as it’s over 7. Doctors ordered a CT to check her abdomen. This is being done to see if any new fluid collections are anywhere since the stent procedure. One of her cultures came back positive for a new bacteria. Doctors changed up her medication. Meghan stood today for 20 mins at 46 degrees and was allowed to have an ice pop. Meghan had a surprise visitor today from Dallas. Nicole was in Baltimore for work and got to stop by the hospital. CT came back and no new collections of fluid so that is good but during shift change the nurse thought there was some blood in her drains. They are going to redo her labs around midnight.

Monday 1/7/19

Meghan had a good night and almost slept all of it. Labs are looking stable and doctors are happy about that. She was doing some PT today with nurses and they are still waiting for a room on the other unit to open for her. She was moved to IMC (intermediate care unit) around 530pm. 

Sunday 1/6/19

Meghan had a decent night of rest, she had a busy day yesterday with visitors. Hemo is stable around 8.2 and white blood cell count is at 11.5. Me, mom, Dad, jared and gram were watching football with her. She has stood for 15 minutes in her bed today as well. Doctors are hoping to get her back to IMC (Intermediate care unit) again but later today or tomorrow. We are all hopeful for a good nights rest. 

Saturday 1/5/19 - Meghan’s Birthday

Today is Meghan’s birthday & Teagan is 4 months old. Meghan had a bunch of visitors and she got to see Hunter and Teagan. The nurses let Meghan have a pretty relaxing day. Overnight she was having a little anxiety and little chest pain. They did an echocardiogram during the day to see if anything was going on. Later explained to Rob that the left ventricle has moderate decreased ejection fraction of 40-45% and normal is 50-60%. Which in the doctors definition to Rob was the heart isn’t pumping with full strength. They see this happen in patients with prolonged sickness. They also told Rob although it isn’t 100% normal it isn’t worrisome. As Meghan gets better it can go back up. The nurses were so good to Meghan, they brought in a cake and decoration to try and make the day the best it could be for her. Her team of doctors also approved an ice pop for her to celebrate with all of us 💗 Thank you to everyone who sent birthday wishes we told her about all of them. 

Friday 1/4/19

She had an ok night and labs are stable. The nurses are going to try and get her moving today with some PT. She was able to do standing exercises, once in the bed for 10 minutes and twice on the floor for about 30 seconds each time. They changed her dressing on her abdomen and doctors are happy with how that looks. 

Thursday 1/3/19

Results from the amylase came back high so the stent surgery will be today. Labs are holding stable. She finally got some good sleep early morning today. Surgery will be between 4-5pm. So from the surgery they saw major pancreatic duct damage. The doctors are calling these disruptions. They are explaining to Rob the three parts of the pancreas, the head is where it is connected to the intestines and that is intact. The body and tail are where the leaks are. Due to all of the disruptions they were not able to do the stent to completely bridge all of the leaks. Its possible that the stent could help but not 100% the way they would have liked it to. 

Wednesday 1/2/19

Stent surgery should be today, when they have a time the doctors said they would call Rob. Still no time at 4pm. They decided to run another test called Amylase. This test measures the enzymes the pancreas puts out in the body. The test can determine if there is disease/disorder of pancreas by measuring the amount of amylase in your body. Meghan’s gastroenterologist wanted this test done to make sure the stent surgery was absolutely necessary. If the level is high they will do the surgery tomorrow. 

Tuesday 1/1/19

Meghan was a bit nauseous last night but the nurses are thinking it’s from the pain medication. They took another CT today just to make sure nothing was off due to all of Meghan’s nausea. Official read isn’t back but nothing looks alarming. The doctors did a dressing change today and no bleeding was seen. They are going back to labs only once a day now. They don’t want to take them if it isn’t necessary.  Today not much going on for Meghan, but hopefully getting rest. 

Monday 12/31/18

• Meghan’s labs are staying stable. She had an ok night and no issues. Labs are going to be dropping again to only twice a day since they have been stable for a few days in a row. Hunter was with me for New Year’s Eve and we got to FaceTime with Meghan at midnight to say hi 💗 Thank you to everyone for continued prayers and definitely wishing for better health in 2019!

Sunday 12/30/18

MRCP was done at 1am. They saw what they needed to and saw where they can put a stent in to hopefully help the healing process. They hope to do the stent sometime this week. She was doing very well with only pressure support from the ventilator so hoping she will be off of that by the end of today. The MRI came back that 2/3rds of the front and the back of the pancreas are viable. There is a part in the middle that had the damage. This is where they are going to place the stent. The surgery is less invasive as they use a camera going through her mouth. She got off the vent around 1-1:30pm. So hopefully she will do good with that and it will only be needed again for surgeries. 

Saturday 12/29/18

Meghan had an ok night. Her labs are stable. She is still on the vent but a very low setting. Meghan just rested for the day around 5:30 her hemo went down again from 8.8 in the morning to 7.7. They are going to order a special MRI to look at the pancreas and area around it. The MRI is an MRCP (Magnetic resonance cholangiopancreatography).

This will show them what is damaged, how much of the pancreas is functioning and if there are any leaks. They do believe her labs at 4 were off because she has no signs of bleeding. The MRCP was not able to be done in the past due to how swollen everything was, it would not show the info the doctors were looking for.